Taking every precious day as it comes

gastrostomy

Q. What do you do in the summer holidays if you have three children under five, one breastfeeding constantly, one addicted to cartoons, and one severely disabled?

A. Take them camping. No joke*.

So, we picked a week with a half-decent weather forecast, if not a decent health forecast (Benjamin had just started vomiting up alternate feeds, and all three children were likely incubating chicken pox) and booked a pitch at the only campsite in the UK that had any space and a more than two-star review of its toilet block. We prepared thoroughly by watching a YouTube video of a group of young, attractive people pitching our tent with ease.

Having planned the trip less than 24 hours in advance (because if I’d had 24 hours to think about it I’d have realised what a ridiculous idea it was), the car club estate car was already booked out to someone else, so we decided to go in convoy in two teeny tiny cars instead. Despite the lack of many essential camping items, both cars were filled to the roof with disability equipment, cuddly toys and emergency chocolate (mine) and whisky (his).

We drew lots and I got the car with the two smaller children, carrying with it a slightly higher risk of vomiting but a much lower likelihood of having to listen to The Little Mermaid audio CD non-stop for the duration of the journey. Since my two children were more likely to require emergency stops for cleaning purposes, this meant I was to lead the convoy. This in turn meant I was to navigate. Hence our first stop turned out to be ‘Heathery Tops Farm Cottages’ instead of ‘Go Outdoors Superstore Berwick-upon-Tweed,’ much to the bemusement of some dog-walkers who had to get off the road repeatedly as two cars drove past them twice, turned around, and drove past again without so much as stopping to look at Heathery Tops Farm Cottages.

Having finally made it to Go Outdoors, we purchased a hefty extension cable for hooking up to the campsite power supply, a fancy airbed and foot pump, a waterproof picnic blanket, a proper big camping stove, and a gas cylinder that didn’t fit the proper camping stove. These were crammed into the cars in such a way as to be guaranteed to fall out upon opening the doors, and we were on our way.

Bluebell Farm Campsite, Belford, didn’t seem to have any bluebells – or a farm – but it did have an abundance of rabbits, ducks, swans, pigeons and even an ostrich, a very friendly and helpful owner and, most importantly, a pub and a fish-and-chip shop on the doorstep.

Pitching the tent didn’t seem quite as easy in a steady drizzle with two adults, one of them simultaneously breastfeeding, an overenthusiastic four-year old, and a crowd of ducks, as it looked on the sunny video, but we managed it before dark and headed off for a very late supper in the Black Swan. It was well and truly dark by the time supper was over so we gave the kids a quick wipe over with a wet-wipe, put them to bed, all in a row, and congratulated ourselves on a job well done.

In the early hours of the morning, just as the drizzle turned to more persistent rain, I returned from taking Jackie to the toilet (Oh! The joys of camping) to find Ric staring at a puddle on the roof of the inner tent. The puddle quickly became a drip, and the drips quickly multiplied until it was clear that a couple of kids’ beach buckets and a few incontinence pads were not going to solve the problem. Since I was already damp from the aforementioned toilet trip, I headed off half-naked to fetch a small tarpaulin from the car, which I then attempted to drape over the tent. Fortunately the friendly and helpful (and now also bemused and amused) campsite man was up by this time, doing things with bins and tractors, and gave me a hand.

Over a reviving coffee (made on our old, tiny stove for which we did have a correct if nearly-empty gas cylinder), we debated whether to go home or go shopping. Rashly, I allowed Ric and Jackie to drive back to Go Outdoors (should totally have bought shares in them before we started…) while I stayed behind to mop up. They returned with a new tent (almost identical to the first and just as hard to put up, but a slightly less bilious shade of green and, being the ‘Deluxe’ model, waterproof), a new gas cylinder, and a towel shaped like a ladybird.

Thus Day Two of the expedition, which I’d intended to spend relaxing around the campsite toasting marshmallows and playing petanque, was spent pitching the Deluxe tent, transferring everything from the ‘Classic’ tent to the Deluxe, and taking down the old Classic (which was no easier than putting it up, and possibly wetter). On the plus side, we successfully attached the gas cylinder to the stove, cooked pasta without scalding ourselves, and even all had a decent wash.

On Day Three, we got cocky and decided to go on An Excursion To Holy Island. Which is reached by a single-track causeway only navigable at high tide, and to which everyone else in the northeast of England seems to go during the school holidays. With a frisson of excitement we checked the ‘safe crossing’ times and decided we’d be fine if we didn’t stop for lunch.

We had such a great time exploring the ruins, buying postcards and playing ‘spot the man dressed as a banana’ (a stag do? I have no idea) that we decided to stop for lunch.

Lunch over, we joined every man, woman and banana in the mad rush to get back to the car park and over the causeway before the tide came in and marooned us. Except unlike everyone else we did not just leap into our car and drive away, because in our haste to get into the car Benjamin’s gastrostomy button somehow got pulled out. As the contents of his last meal spurted all over the car park I realised we did not have any of the correct equipment with us to replace the button – and the button must be replaced as soon as possible to prevent the site closing up.

I like to think I could give MacGyver a run for his money, so with great agility I grabbed the car key (I really hope our community nurse isn’t reading this) and used it to open the valve in the button, allowing the water-filled balloon to empty and the button to be re-inserted into Benjamin’s stomach. Of course, without the water-filled balloon full of water there is then nothing to hold the button in place, so Ric then had to drive like lightning ahead of the racing tide, with me holding the button in place for dear life, to get back to the campsite and the correct size syringes…

…which were of course in the bin as I had helpfully used our only pair to change the water in the balloon that morning. So we swapped roles for a bit, Ric acting as button-securer while I fished around among the dirty nappies and empty pasta-sauce jars for the syringes (I really hope our community nurse isn’t reading this).

Syringes sterilised, button balloon refilled, children released from the car seats in which they had been imprisoned to prevent them interfering in our delicate operations, we breathed a sigh of relief. The final stage of replacing a gastrostomy button is a mere formality – drawing out a small amount of stomach contents to test that the button is actually in the correct place (i.e. the stomach) and it is safe to start feeding again. The idea is, that since stomach acid is, well, acid, a pH test should verify that the button is in the right place. The problem, with Benjamin, is that he is on a considerable amount of antacids so it is well-night impossible to get an acidic reading… Anyway, to prevent this becoming a long(er) medical saga, I will just say that four hours, several more pH tests, an hours’ drive in the direction of a non-existent A&E department at Berwick hospital, three frustrating phone calls to NHS Direct, and one simple phone call to a sensible nurse on Ward 4 at Edinburgh Sick Kids, we finally determined that the button was indeed in the correct place, gave Benjamin his long-awaited lunch, and headed to the Black Swan for a large G&T.

Recovering with a biscuit

Was it on Day 3 or Day 4 that Jackie was swinging on a railing, fell off and cut her head open? Actually on closer inspection it was her ear she cut open which is probably less life-threatening but nonetheless there was a lot of screaming and gallons of some blood (enough to unnerve a mummy who has just found out there is no A&E department at Berwick) and she will now forever have a notch in her ear like a stray dog that’s been in a fight.

On Day 4 we thought we’d rekindle the spirit of traditional British holidays and go for a picnic on the delightful (seriously) beach at Beadnell, so Jackie could go rockpooling. There weren’t really any rockpools but we found two snails and a small dead crab, took it in turns to eat sandy Scotch eggs and hold Caitlin who was screaming and would not be put down, then had to make a mad dash back to the car when the heavens opened. So I think we achieved ‘traditional British holiday’ pretty well. We finished off the day singing Christmas songs all the way back to the fish-and-chip shop.

And so we return, one new tent and a whole lot of sand heavier, all our chocolate and half a child’s ear lighter. On the plus side, the weather was on the whole good. Benjamin stayed stable and slept soundly in an improvised mound of pillows. Jackie failed to mention Peppa Pig for the whole trip. All the kids benefited from spending time together – I caught Benjy and Caitlin sneakily smiling at one another on more than one occasion. Nobody managed to sneak a rabbit into their luggage (so far as I know). I’ve learned never to go anywhere without a full set of equipment for inserting a gastrostomy button. And nobody came down with chicken pox until we got home.

*Disclaimer so my mum doesn’t worry (too much): some elements of this narrative may have been exaggerated.

Like this:

It’s been a few weeks now since Benjamin got his mic-key button fitted. The operation went smoothly and we were home in a couple of days. Beforehand, I asked “will this give me my happy little boy back?” With all the research on earth we weren’t going to know the answer to that question without trying it. Here’s what we’ve found out so far.

On the plus side…

Benjamin is thriving, piling on the pounds, filling out, and growing out of his clothes.

We don’t have to spend all day just trying (and failing) to squeeze enough calories into him orally.

We’re all getting (a little bit) more sleep. There are still plenty of other reasons for Benjamin (or Jackie) to get us up in the night, or to keep us up late, but at least hunger isn’t one of them.

The button hasn’t (touch wood, cross fingers, do a dance to the patron saint of gastrostomies) come out, so Benjamin hasn’t had an A&E admission since.

It’s easier to get him to take his medications.

I feel slightly less of a fraud for claiming carers’ allowance and DLA, now that he has something obviously “medical” for me to deal with.

On the minus side…

I can no longer bring him into our bed to comfort him. At least, it takes a lot more effort to switch off and disconnect everything, and later reconnect it all; not ideal when you and he are both knackered and you just want to scoop him up and take him straight under the duvet.

Overnight feeds mean over-full nappies, so more often than not I have an uncomfortable boy and a heap of bedlinen to wash in the morning.

It’s a tiny bit more hassle feeding on-the-go. And we get more funny looks.

We have a lot more stuff to travel with. Gone are the days when it was just me and my breasts. Now we have pumps, night milk, day milk, giving sets, extension set, syringes, more syringes, spare buttons, stuff to wash it all with, and gallons of cooled boiled water, on top of all his medications and the usual nappies and stuff. Holidays by train are looking increasingly like a thing of the distant past. But it could be worse: we don’t, like a lot of people, have to carry oxygen cylinders and sats monitors and suction-whatevers. Yes, it could be a lot worse.

It looks like it’s for good. Basically, his tummy is full all the time. If we’re going to keep giving him half his calories overnight through a tube, I fear he’ll never be hungry enough to learn to eat properly in the day. So is this it? Will he be tube-fed for the rest of his life?

So, on the whole, a big success. Refer to plus-point 1: Benjamin is thriving (his other health problems notwithstanding). We are, slowly, getting more smiles. It would take an awful lot more negatives to outweigh that. And therefore to minus-point 5: Will he be tube-fed for the rest of his life? Who cares?

Like this:

Last night, as I was kissing Benjamin goodnight, he smiled at me. Just last month this would have been no big deal: whatever happened during the day, I knew I could rely on getting a smile as I leaned in for a kiss before turning out his light. Yesterday, it was a rare glimpse of my once-contented little boy, a chink of light at the end of our present, particular tunnel.

A few weeks ago, I cried on the shoulder of a hospital doctor as we agreed to put an NG tube in, just overnight. I felt that I had finally failed in my first duty as a mother – to feed my baby. But I couldn’t argue with the difference it made. That tube stayed in, and with its extra nourishment Benjamin began to put on weight, to settle in the evenings, to have time to enjoy his oral feeds too.

A couple of weeks later, the NG tube ‘came out’ (I’m not going to say how it came out … okay, I admit it, I accidentally pulled it out. Not a clumsy toddler, not Benjamin himself in irritation, but me. Bad Mummy). After two days and countless nosebleeds at the hands of the best nurses in the country (wonderful, skilled, gentle, caring nurses who hated putting him through each attempt as much as I did), we agreed that an NG tube was not going to be ‘a sustainable solution’ for Benjamin’s feeding. A meeting was held, we agreed to be pencilled in for a gastrostomy, and we went home and back to oral feeding as before.

For the first week or so, he would guzzle down five bottles a day: the full amount that he had been getting through both oral and tube-feeding before. We voiced the question, “If he can do this, do we need to go for the gastrostomy at all?”

But we didn’t realise that the effort was exhausting him. Gradually he began to flag. His feeding became slower, from twenty minutes a bottle to an hour, two hours, to not finishing one bottle before the next was due. He’s now getting barely half of what he needs in a day, and that is taking him all day. If he isn’t feeding (or vomiting) he is sleeping. His breathing is rattly. He dozes through his pureed ‘meals.’ He cries, sometimes strongly, sometimes weakly. He’s constipated. He has no time to learn, no energy to play. He rarely smiles.

So, I never thought I would, but I am counting the days until his gastrostomy. Trying to keep him hydrated, fed, happy and infection-free for just a few more days until the operation. Praying that he won’t be so sick they’ll postpone it. Ready to fight if they do because – I truly believe – until we get this ‘mickey button’ he will just continue to get weaker. The button is no longer a lifestyle choice for us but a means to a life worth living for Benjamin.

Am I setting myself up for disappointment? Pinning my hopes on a tiny tube? Can it really solve Benjamin’s feeding difficulties, stop him bringing his feeds back up, restore his smile? Will it revolutionize our lives? Will I be able to take the kids out for the afternoon (feeding pump in tow) instead of being tied to the sofa, bottle in one hand, muslin in the other? Will it give me my happy little boy back?